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Originally Posted by SJF
I also have questions around transplants (stem cell and bone marrow). At what point are they considered? Are they only considered after disease progression because they're risky? Or are they suitable not long after diagnosis when you're still relatively healthy (RARS with a IPSS score of 0).
At 59, would dad be a suitable candidate? Possible that he could go into remission after a successful transplant?
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Sam,
Wait-and-watch, supportive care (transfusions), and drug treatments including immunosuppressives and growth factors are almost always preferred treatment choices for lower-risk MDS, but every case is different so there's no reason not to let the possibility of a transplant be part of the discussion.
Unfortunately, the effectiveness of a transplant is highest when it's done sooner in a disease's progression, with the patient being as healthy as possible, but that has to be weighed against the inherent risks of a transplant. Yes it's possible that your father could achieve remission with a transplant, but it's also possible that he could respond well to less risky treatments. That's why other treatments, or little or no treatment for low-risk MDS, are usually the first line of attack.
Age 59 is within the usual transplant age range. Your father's overall health and the availability of a matched donor are factors as well.
Your father's hemochromatosis complicates the picture, since phlebotomy (blood draws) to reduce iron stores can worsen anemia and the associated symptoms. At some point other methods of chelation (iron reduction) may have to be considered. Hemochromatosis can be a threat to the liver, so that alone is a good reason to avoid or reduce alcohol consumption.
Don't be shy about talking to the doctors and asking any questions you have. It's their job not only to treat your father but to let him and his family help in understanding his condition and participating in treatment decisions.